MAK­ING A DIF­FER­ENCE

A smart phone app that’s en­abling women in ru­ral Rwanda to bat­tle breast can­cer.

Friday - - Contents -

Mu­lungi Sh­wema caught her breath as her fin­gers brushed against a lump. She was at home in Gisozi, in the Gasabo dis­trict of Rwanda, and per­form­ing a self­ex­am­i­na­tion just as she had seen on a smart­phone app a health worker had shown her ear­lier at the com­mu­nity health cen­tre.

She felt her breast again but there was no mis­tak­ing it – the lump was slightly big­ger than a pea. Tak­ing a deep breath, Mu­lungi, 38, sat down, try­ing not to panic. She re­mem­bered the in­for­ma­tion fromthe app – go back to the health cen­tre if she found a lump. Amother of two, Mu­lungi hur­ried the kilo­me­tre to the clinic and blurted out her news. ‘We may need to do a biopsy,’ the doc­tor said af­ter ex­am­in­ing her.

The biopsy re­vealed the lump was can­cer­ous and that she needed a mas­tec­tomy and chemo­ther­apy. ‘But you de­tected it early,’ the doc­tor said, ‘be­fore it spread.’

That was last month. Mu­lungi is just one of around 10,000 women whose lives have been saved thanks to a sim­ple phone app by the Breast Can­cer Ini­tia­tive East Africa ( BCIEA). ‘I was lucky to have found it early,’ she says. ‘I didn’t know about self­ex­am­i­na­tion and so had never done it be­fore. The in­for­ma­tion I’d read and pic­tures I’d seen on the smart­phone were what made me check.’

The woman re­spon­si­ble for get­ting the smart­phone and the app to the vil­lage in Rwanda – Philippa Kibugu-Decuir – is happy one more life has been saved in time.

‘The phone may look small,’ Philippa says. ‘But this is re­ally what is help­ing save the lives of hun­dreds of women in the re­mote vil­lages of East Africa.’

The smart­phone, which costs around 126,316 Rwanda franc (Dh623) and comes pre­loaded with the app that Philippa built with sev­eral app de­vel­op­ers in the US, has now be­come a po­tent tool in her cam­paign to raise aware­ness about breast can­cer in Rwanda, where lack of knowl­edge, myths

about the dis­ease and poor fa­cil­i­ties had un­til re­cently pre­vented women from go­ing for check-ups and treat­ment.

Ina coun­try where mobile phone us­age is rel­a­tively wide­spread, Philippa hopes the app will spread in­for­ma­tion about symp­toms, how to do man­ual tests to de­tect lumps, and plenty of other de­tails in or­der tomake it easy for women to un­der­stand and take ac­tion that could po­ten­tially save their lives.

In just two months since the ini­tia­tive was launched, it has ed­u­cated thou­sands of peo­ple in Rwanda. Women have done self-ex­am­i­na­tions and ap­proached health cen­tres and doc­tors af­ter find­ing lumps.

The few who found that their lumps were can­cer­ous have been quickly re­ferred to larger hos­pi­tals in the city where they have been treated or are un­der­go­ing treat­ment.

Philippa, a Rwan­dan-Amer­i­can teacher liv­ing in Texas in the US, knows the dis­ease only too well. She lost her 48-year-old sis­ter Ma­bel, who lived in Gisozi, to breast can­cer and then had to bat­tle it her­self.

‘Ma­bel found out that she had breast can­cer af­ter she dis­cov­ered a lump,’ says Philippa. ‘But there were no hos­pi­tals in the vil­lage that could treat it prop­erly.’

Back then, in the 1980s, mam­mo­grams weren’t avail­able and there were no qual­i­fied on­col­o­gists in the coun­try. Ev­ery time can­cer pa­tients needed ra­dio­ther­apy or chemo, they were re­ferred to hos­pi­tals in neigh­bour­ing coun­tries such as Uganda.

By the time Philippa made ar­range­ments to fly her sis­ter to Lon­don for treat­ment in 1986, it was too late. ‘The gru­elling 21-hour, 6,500km jour­ney wors­ened her health as the can­cer had spread. She had de­vel­oped sec­ondary ter­mi­nal liver can­cer by then. My sis­ter fi­nally lost her life in a hospi­tal in Lon­don af­ter fight­ing for amonth,’ says Philippa. ‘She had strug­gled with the dis­ease for more than five years, but if she had de­tected the lump ear­lier and had had ac­cess to treat­ment, she could have been saved.

‘I was dev­as­tated and de­ter­mined that her death should not be in vain. So I set about re­search­ing breast can­cer – its symp­toms, screen­ing, treat­ment and how to dis­tin­guish fact from fic­tion.

‘I wanted to do some­thing to raise aware­ness among other women – my sis­ters in the vil­lages of East Africa – who might be able to de­tect breast can­cer in time and save their lives. I was con­vinced greater knowl­edge of the con­di­tion would lead to faster treat­ment and im­proved sur­vival rates.’

As she trawled on­line, Philippa re­alised she had to start from the grass roots – the ru­ral com­mu­ni­ties of Africa. Breast can­cer is the­most com­mon can­cer among women in Rwanda fol­lowed by cer­vi­cal and stom­ach can­cer, ac­cord­ing to statis­tics from the Min­istry of Health. But sadly, sev­eral myths pre­vailed – that it was na­ture’s pun­ish­ment for a wrong­do­ing and noth­ing could be done about it; that screen­ing causes in­fer­til­ity, it’s a dis­ease of the West, con­ta­gious and so on.

Some mar­ried women di­ag­nosed with breast can­cer were stig­ma­tised in their vil­lages be­cause of the mis­con­cep­tion that can­cer is con­ta­gious. They also faced the hu­mil­i­a­tion of lo­cals call­ing on their hus­bands to re­marry. So, in many cases, women avoided be­ing di­ag­nosed by vis­it­ing doc­tors in case they were shunned.

‘For eight years I worked re­lent­lessly af­ter work, com­pil­ing every­thing I could about can­cer,’ says Philippa. ‘I spoke to ex­perts and for­mu­lated plans on how to raise aware­ness about the dis­ease in my home coun­try.’

She wanted to print brochures and pam­phlets about breast can­cer and dis­trib­ute themin the vil­lages. Then one day, while in the shower, she found a wal­nut-size lump in her left breast. ‘Hav­ing stud­ied so­much about the con­di­tion, I knew I shouldn’t ig­nore it and quickly made an ap­point­ment with a doc­tor,’ she says. A biopsy re­vealed that she had in­va­sive duc­tal stage 1 breast can­cer. Philippa un­der­went a dou­ble mas­tec­tomy with re­con­struc­tion, fol­lowed by chemo­ther­apy.

‘I had a team of ex­cel­lent doc­tors, nurses and a sup­port sys­tem in­clud­ing my lov­ing fam­ily, and five years later was de­clared can­cer-free,’ she says.

‘That’s when I re­alised how priv­i­leged I was. I had ac­cess to good health care and so could take im­me­di­ate ac­tion. But women in some ar­eas in the world – like the vil­lages of Rwanda– were not so lucky. The lack of proper health care could cost them their lives.

With one out of 12 women world­wide be­ing di­ag­nosed with breast can­cer at some point in their life­time, Philippa be­lieves that ev­ery pa­tient de­serves the same treat­ment op­tions that she had.

‘Where one’s home is lo­cated should not de­ter­mine if she lives or dies,’ she says.

Itwas with this mind­set plus the ‘un­ex­plain­able en­ergy that only a sur­vivor can un­der­stand and the will to hon­our my sis­ter’ that com­pelled Philippa to found BCIEA in 2008. Its aimis to spread aware­ness about the need to do reg­u­lar man­ual check-ups and con­sult a doc­tor if a woman no­tices lumps or other signs of breast can­cer. The char­ity has gone on to print and dis­trib­ute pam­phlets to more than 20,000 peo­ple across sev­eral vil­lages.

‘It was while I was in Rwanda ear­lier this year that I re­alised how wide­spread the use of mobile phones is and one day, had a light-bulb mo­ment,’ says Philippa. ‘Why not use mobile phones to spread in­for­ma­tion about breast can­cer?’

In this East African coun­try, where 72 per cent of the pop­u­la­tion has a mobile phone, it is es­ti­mated that 67 per cent of own­ers lack any kind of in­for­ma­tion about breast can­cer screen­ing or self-ex­am­i­na­tion. Avast ma­jor­ity of the phones are ba­sic, as ex­pen­sive smart­phones are un­af­ford­able. Ad­di­tion­ally, in­ter­net pen­e­tra­tion in Rwanda is just 25 per cent and 98 per cent of the mobile de­vices do not sup­port fast-speed in­ter­net, which means they are un­able to down­load video or pic­tures quickly.

‘I felt that if we made phones avail­able for women with an app about breast can­cer, it would make it easy for them

Breast can­cer is the most COM­MON can­cer among Rwan­dan women, but too many MYTHS pre­vail ed–screen­ing causes IN­FER­TIL­ITY, or that it’ s na­ture’s PUN­ISH­MENT, CON­TA­GIOUS and a Western dis­ease

to un­der­stand and take ac­tion,’ says Philippa.

Funds were raised through spon­sor­ships and do­na­tions in the US to con­trib­ute to the ini­tia­tive– One Smart­phone per Vil­lage in Rwanda. And with 14,847 vil­lages in the coun­try, the char­ity has an am­bi­tious tar­get of reach­ing hun­dreds of thou­sands of women. The smart­phone with the app is de­liv­ered to vil­lagers by aid work­ers, badged with the logo: Knowl­edge is Power. Early De­tec­tion is the Best Pro­tec­tion. It pro­vides users with in­for­ma­tion about the char­ity and its work, along with in­for­ma­tion about breast can­cer symp­toms, myths, truths and self-ex­am­i­na­tion.

The app also fea­tures in­spi­ra­tional sto­ries from sur­vivors and a feed­back form where users can ask ex­perts ques­tions.

In Au­gust a woman named Va­lerie re­ceived the first smart­phone load­ed­with the app in Gisozi. She was ea­ger to share it dur­ing her vil­lage fam­ily night and Umu­ganda gath­er­ing.

Va­lerie speaks both English and Kin­yarwanda, the na­tional lan­guage, and­will be able to ef­fec­tively use the app as a teach­ing and ref­er­ence tool. It will soon be avail­able in Kin­yarwanda and Swahili to reach other com­mu­ni­ties.

‘Tomake the phone ini­tia­tive even­more pow­er­ful, we de­cided to link up with so­cial change groups in Rwanda who have ac­cess to re­mote vil­lages,’ says Philippa. As­pire, a women’s or­gan­i­sa­tion based in Gisozi, was the first to re­ceive and be trained on how to use the app and will help dis­trib­ute the phones to iso­lated ar­eas. ‘This will help us a lot be­cause many women are ig­no­rant about breast can­cer,’ says Va­lence Mukashema, a so­cial worker at As­pire.

Philippa also be­gan en­list­ing pro­gres­sive vil­lagers to speak out about the false be­liefs re­lated to can­cer. ‘It was im­por­tant to get rid of the stigma from the minds of the peo­ple and tell them that it was a dis­ease, which, if de­tected early, could be cured,’ she says.

‘We also put up sev­eral bill­boards in and around the vil­lages stress­ing the im­por­tance of self-checks and seek help. I wanted to drive home the point that sur­vival is high­est when breast can­cer is found early.’

Over the years since Philippa has started tak­ing her mes­sage to vil­lages, the re­sults of her work are be­gin­ning to show. There is an in­crease in the num­ber of women who are vis­it­ing doc­tors to get them­selves checked up. ‘There is a change in the at­ti­tude of peo­ple as well,’ she says. Ran­dom sur­veys done among vil­lagers show that there is a height­ened aware­ness about the dis­ease and that, if de­tected early, it could be cured. The stigma as­so­ci­ated with the dis­ease too has started to dis­ap­pear.

In the vil­lage of Ru­tunga in Gasabo, 62women and four­men turned up to hear about the ill­ness and ask ques­tions when the smart­phone was handed over to their so­cial worker, Ny­i­n­awayezu in Septem­ber. ‘Th­ese are hard work­ing and proud farm­ers who were ready to leave their fields to come and hear about breast can­cer,’ says Philippa. ‘Two peo­ple were brave enough to say they have lumps in their breasts and we plan to fol­lowup with them.’

Among var­i­ous other projects, BCIEA funds vis­its by trained nurses to re­mote vil­lages to per­form clin­i­cal breast ex­am­i­na­tions on women and some men aged 35 and above. Sus­pi­cious re­sults are re­ferred for fur­ther test­ing. So pop­u­lar is this par­tic­u­lar pro­gramme that queues form through­out vil­lages to ac­cess the ser­vice when it is there.

In Septem­ber alone, out of 294 women screened, four had sus­pi­cious growth and are be­ing fol­lowed up on. ‘It is a small move­ment, but in time it will grow and hope­fully cover the con­ti­nent, in­form­ing women and help­ing save lives,’ says Philippa.

It was vi­tal to get rid of the STIGMA and tell peo­ple that breast can­cer was a DIS­EASE, which if de­tected early could be CURED. Sur­vival rates are very high when breast can­cer is found EARLY

Philippa Kibugu-Decuir is de­ter­mined to en­sure that women in the re­motest cor­ners of Africa have easy ac­cess to breast can­cer treat­ment

The smart­phone app has al­ready started de­liv­er­ing re­sults, with many women learn­ing how to do self-ex­am­i­na­tion

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